UC San Diego Health System has used a $7.6 million grant from Bayer Healthcare Pharmaceuticals to help launch the first national CTEPH registry to improve best practices and patient care for patients with chronic thromboembolic pulmonary hypertension.
The United States CTEPH registry is a centralized electronic database that will involve 30 sites across the nation. UC San Diego Health System will manage the registry with the goal of enrolling 750 newly diagnosed patients over the next six years. It will allow physicians to follow the short- and long-term outcomes of patients and learn more about CTEPH.
CTEPH is believed to be a complication of a common blood clot condition called pulmonary embolism. It has been reported that as much as 3.8 percent of individuals with first-time pulmonary embolism may develop CTEPH. This suggests there may be thousands of new cases of CTEPH in the United States annually.
“Currently, the number of patients in the United States with CTEPH is unknown. Because the symptom of shortness of breath is nonspecific, many CTEPH patients may be misdiagnosed as having more common diseases like asthma or COPD,” said Kim Kerr, MD, principal investigator and pulmonologist at UC San Diego Health System. “Using data collected from the registry, we will identify barriers to patients receiving the correct diagnosis and treatment of their CTEPH. This registry will also allow us to assess the effectiveness of established and evolving therapies of this disease.”
Nick Kim, MD, pulmonologist and director of pulmonary vascular medicine at UC San Diego Health System, adds that the registry will enrich physicians’ understanding of all aspects of CTEPH in the U.S., including the subset of patients deemed not operable and treated with medical therapy instead.